I’m thrilled to announce this to you all: I’m the co-editor of the above journal. You can see more at the journal’s web site, here.
Hyperlexia: A Literary Journal Celebrating the Autistic Spectrum is looking for your fiction, poetry, and personal essays. Our inaugural issue is planned for October 2008. Send submissions to firstname.lastname@example.org and please include the full text of your writing in the email if you send a PDF or a Word file. Deadline for submissions is August 31, 2008.
Hyperlexia is interested in honest, thoughtful, well-written poetry and prose about being autistic, and loving someone with autism. Our journal is a celebration of real life with autism, both the good and the bad. We want genuine and truthful writing about autism. You can be serious, sad, or funny. We believe in respecting the diversity of the human mind and discriminatory writing or hatred of any kind will not be published. Submissions should be 1500 words or less.
So, get writing! This thing will only fly if you write for it, after all! Deadline for submissions is August 31.
I know you’ve often wondered “How the hell does she stay so calm with six freaking kids?”
I have a secret.
It’s like a little piece of heaven for my ears. Just enough to make me be able to tend to Trixie screaming her fool head off because someone won’t give her a clothespin or a spoon or some trivial object. Without smacking her, I mean. Cause I guess that would be one way to deal with it but I’m agin it, you know.
Highly recommend them if you have the means.
You keep opening my mind. If you keep this up I’ll get obsessed with disability advocacy and dammit I don’t want another obsession!
Fascinating post on taking back the term ‘retard’ in the same manner as queer and crip.
My friend C has a mom, like most of us. Like my mom. And very much like my mom, in one VERY IMPORTANT respect: they both really, really like this guy.
That’s Toby Keith, for those of you who don’t follow country music. He’s a native son here in Oklahoma. My mom and I saw him with stageside seats right as Should Have Been A Cowboy was climbing the charts, for free, at the State Fair, with about a hundred other people. Now his concerts are considerably harder to get into.
Which is where YOU come in!
C’s mom will win four tickets to see Toby in concert if her dog wins a contest. She’s in second place! Here are your instructions:
1. Go here.
2. Vote for dog #9. The little black dog with the enormous tongue. That’s Dog #9.
3. Refresh the page and do it again.
I don’t like Autism Speaks. They produced a film called Autism Every Day that interviewed the mothers of several autistic children, and while there are almost too many vile points for me to list, the very worst had to be where the mother of one of the children, with the child in the room, said she wanted to kill herself and her child, but she didn’t because she had her normal daughter to take care of.
I’m not putting words in her mouth, that’s what she said, with the object of her murderous thoughts right there in the room with her. You can google and watch the video, I don’t want to link to them. And then she said that every autism parent had had those thoughts.
So that’s how Autism Speaks feels about autism. They want to kill it – which means killing the people who are autistic, either in utero or after, it’s okay with them.
Just a few days after they released their movie of hate Karen McCarron killed her daughter Katie.
So, enough with the background on how awful Autism Speaks is.
“‘Autism Speaks’ can go away. I have Autism. I can speak for myself.”
because it violates a copyrighted design of Autism Speaks. Now I don’t know much about that law, but it sure seems that they can’t do that. So I’m posting about it. And later on I’m going to make a shirt available to buy.
So we’ve looked at a couple houses now. We’ve found one we like a lot, on a one-acre lot just south of Guthrie.
We’ve been taking the kids with us to look at stuff (mostly because we have to, and partly because we like to hear what they think too) and therefore Bede has been getting put in situations where he is expected to behave in certain ways: walk at the side of or very close to an adult, be relatively quiet, wear clothes, don’t touch.
Mostly he does not behave in those ways. He has about 3 to 5 minutes (I am being generous) of relatively compliant behavior before he becomes a puddle of yell on the floor, or a bolt of boy lightning charging for a fence. The houses with actual people still living in them are hard, because he isn’t permitted to examine the belongings of the owners to his satisfaction, nor is he allowed to run amok through the house. However he has kept his clothes on, which is great!
Anyway, he has a a hard time. If I am able to give him my full attention he does okay, even good, but I have 5 other children. Sean and my mother are there as well to tend to the other 5 but they still sometimes need me, so it gets kinda tense. Which is the point of my title: the look.
I think most parents are familiar with the look. You all have kids who behave in ways that others judge as bad in public, and at some point someone has glared at you disapprovingly. I’m used to that look, I’ve gotten it for years (I try never to give it, however.) And I’m pretty okay with it. If my job in life is to give someone else a reason to feel better about themselves, well, so be it. Not my problem.
But when Bede goes farther than a nonautistic child would, then I get the OTHER look.
The pity look.
I hate that look. Sometimes we get it with no introduction, but we usually get it when I say “He’s autistic. This is tough for him.” Then their look goes from anger to “Oh, you poor woman!” laced with “Thank God I’m not you!”
We do not want your pity. We want your understanding.
If you are faced with meeting an autistic child in distress, please don’t look sorry for the parents. You can express sympathy for the child in question, who is having a difficult moment, but please don’t look sorry for the parent. And don’t tell us we’re strong, or that you couldn’t do it, or whatever.
We’re just doing what anyone would do. Parenting our kids.
I guess a lot of this was spiked by the Good Morning America segment on autism acceptance. Diane Sawyer ends it with a bit of untrue treacle: “isn’t it [autism acceptance] a beautiful way of expressing heartbreak?”
No it is not. Acceptance is the other side of heartbreak, Diane. Acceptance is HOPE.
We have to move again because the landlord wants to sell this house. Argh! Renting. So we’re going to try to buy this time. We’ve been looking at modular housing from these guys (we especially like this floorplan) and now we need to find some land to stick a house on. We don’t have a time limit yet but I want to be proactive and move out before we have to. And I know how much Sean loves to move in the middle of the summer in Oklahoma! Not.
Oh golly. I didn’t notice what time it was. I have to run to get ready fer dinner at the ‘rents. Ta!
Been having a lot of fun playing with the captioner at I Can Has Cheezburger.
Well, today my children were book orphans because I both started and finished a book. That hasn’t happened since the last Harry Potter, I don’t think. What was the book, you ask?
Loose Girl, by Kerry Cohen. It was excellent. Raw, and honest, and ugly, and beautiful. Really good read. Go get yourself one.
I’d like to encourage everyone to scroll down on the right there and click through to the site behind the button for Getting the Truth Out. Don’t be discouraged by the first few screens, it’s very important to watch the whole thing.
We just got a new (to us) 1988 Ford Econoline Club Wagon diesel van! Our friend Kenny gave it to us because he’s just about the most awesome man on the planet.
It looks a lot like this:
Sean’s not a gambler, and we’re Catholic, not Mormon. Oh, and we have six kids instead of five, so I spect he’s got nothin to worry about.
But go have a listen to Nancy Griffith singing “Ford Econoline” anyway, because it’s just a great song.
She drove west from Salt Lake City to the California coastline
She hit the San Diego Freeway doing sixty miles an hour
She had a husband on her bumper
She had five restless children
She was singing sweet as a mockingbird in that Ford Econoline
She’s the salt of the earth
Straight from the bosom of the Mormon church
With a voice like wine
Cruising along in that Ford Econoline
Now her husband was a gambler, he was a Salt Lake City rambler
He built a golden cage around his silver-throated wife
Too many nights he left her crying with his cheating and his lying
But his big mistake was him buying her that Ford Econoline
Now she sings her songs around this country
From Seattle to Montgomery
Those kids are grown and that rounder knows
You cannot cage your wife
Along the back roads of our nation, she’s become a living legend
She drives a Coupe DeVille but her heart rides still
In that Ford Econoline
Last week I mentioned that I’d be buying Bede a laptop with his SSI back pay money. I was leaning towards the ASUS eee, but instead I went with the 2go PC, the second generation of the Intel Classmate. It’s designed especially for kids to use and abuse (it can withstand a 6-foot [1.8m] drop, for one thing) and it looks like just what we need. The eee seemed too flimsy for the likes of a 5 year old autistic boy who likes to balance things on his feet while he lies on his back.
Laptopmag’s blog has a pretty good review of it, with a video to show how small it is. It’s about the size of a trade paperback and weighs less than 3 pounds, and it gets around 3 hours of use per charge.
I’m very excited.
Faith’s been having fun modding screencaps of Club Penguin. I’m sure she’d love it if you all took a look.
I just ordered some stuff from Dharma Trading and I was wondering where it was. So I checked the email they sent me when it shipped, logged in to the UPS website and saw it was last seen in San Pablo CA. I wondered where that was, and then had an idea: what if I could track the package on a map?
This being the internet and all, of course someone has already thought of that, and here they are. Yay, internets! The kids ask me all the time where things are on their way to us, I can’t believe I didn’t think of this sooner…
Kristina Chew blogged recently about The Mosquito, a device that emits a high-pitched obnoxious whine that is generally only detectable by people under 25, and is used to deter teens from hanging around a given area. As we age, our ears lose the ability to detect really high sound frequencies, so it doesn’t bother adults with normal hearing. It seems to drive many autistic people up the wall, however, whatever their age, so some businesses are not going to use The Mosquito any longer. (Here’s a BBC article about the device, if you’d like a little background.)
So, my question is, can you hear it? Post yes or no, along with your age if you dare, in the comments.
It’s the pulsing “beep beep beep” noise, not the voices and background noise. I expect nearly everyone who’s not hard of hearing or deaf can hear that.
I fully support the new legislation here in Oklahoma requiring pregnant women seeking an abortion to undergo an ultrasound prior to the abortion.
http://playborhood.com/ wants your kids to get out of the house and play play play!
ALVA — As a mentally challenged man screamed and pleaded for his torture to end, his attackers held him down, shot him repeatedly with paintball and BB guns, and branded him with searing coat hangers.
“Mommy, mommy,” the victim screamed, to no avail.
His torturers videotaped the episode, with one so proud of his work he listed his own name as the video’s director, producer and star.
Now, two Alva men face felony charges in the undated video. A Woods County judge set bail at $75,000.
“It was a gruesome assault,” said Ben Orcutt, Alva’s assistant police chief.
The victim, Harry Dahling worked with Jesse T. Wallace and Marvin Michael Tarver at a local food processing plant.
Police confirmed the victim is autistic and said he had trouble answering questions about the assault.
“He may be 20 or 21 years old, but he acts like a juvenile,” Orcutt said.
This happened here, in my home state, about 2 hours drive from my house. When I read about it in yesterday’s paper I was almost physically sick. It felt like a punch in the stomach to read about Harry Dahling crying out for his mother as he was tortured.
My autistic son is on the sofa next to me, having fallen asleep in my lap while we watched a movie. He is happy and safe.
But the fear and loathing that has been in my throat since I read about Harry will keep me awake for much of the night. Like every parent, I am concerned with my childrens’ futures, but unlike most parents I don’t have a default cut off point to stop worrying. He will likely need some assistance for the rest of his life.
Will he ever cry out for me when I’m not there?
The puzzle ribbon.
As far as I know, it’s the logo of the Autism Society of America. I don’t know where it came from beyond that. I did a cursory Google to try to get some history behind it, but came up with little. It’s now overwhelmingly associated with autism and autism awareness.
I chose to use the non-puzzle ribbon graphic for my blog this month. On the face of it, I don’t really have a problem with the puzzle ribbon. I’m sure I puzzle Bede. I also like the idea of an iconic symbol for the cause of autism awareness. But still, I don’t use it.
I don’t use it because people are not puzzles. Or, if they are, they aren’t especially more puzzling because of their autism. The puzzle implies, to me, that autism has to be put together by someone before it is complete. That the autistic person is not an agent, a person, himself – until he is assembled. That could not be farther from the truth. Bede, and every other autistic person I know both online and in the flesh, is a whole, complete person needing nothing added or removed from him to make him finished. He does not need a cure because he is not sick.
So that’s why I don’t like the puzzle ribbon and the puzzle metaphor, and why you won’t see it here.
Thinking of getting one of these for Bede when his SSI payment comes in. It gets great reviews. He uses the computer to communicate more and more and it would be great to have something portable for him that’s his. We have a laptop but it’s quite fragile, and the ASUS is marketed as shock proof.
I also like the name. Bede warbles and hums as he runs about in the house, and that sounds like him: “Asus! EEE!”
Seen at a comment left at Wyatt’s Blog by the tao of fish:
And remember to have a packet of smarties some time today (it’s a new ritual for the 2nd of April…). You must sort them before you eat them, and you must eat them in a specific order of your choice. Those are the only rules.
I’m not in a country that sells Smarties*, but we do have M&Ms, which I hope are an acceptable substitute. Bede sorted mine for me, and in fact fed them to me, one by one, in this color order: red blue brown green yellow orange. That’s all the reds, then all the blues, and so forth.
*Smarties here are a horrid little candy that consists of long cellophane wrapped tubes of sugar pills, and we mostly only eat them around Halloween.
To kick off Autism Awareness Month I would like to direct you to an essay written by Kerry Cohen called What’s Wrong With This Picture.
Whenever I outline this list — the list of where he is “behind” and where he is “on par” or “ahead” — I get uncomfortable. None of it captures who he really is, which can’t be contained in a paragraph or maybe even with words. He’s just Ezra. He’s just who he is.
Kerry and I ‘know’ each other from a special needs parenting board near and dear to both our hearts. It’s a great essay and I think you’ll enjoy it.
Bede’s up for his annual visit with the spectacular Diana Mobley, PhD in a month or so. I’m thinking over his development this year, along with autistic mind structure, and I saw these tests posted in a community for adults with Asperger’s Syndrome.
I took ’em.
Autism Spectrum quotient:
Your score: 40
0 – 10 = low
11 – 22 = average (most women score about 15 and most men score about 17)
23 – 31 = above average
32 – 50 is very high (most people with Asperger Syndrome or high-functioning autism score about 35)
50 is maximum
Your score: 67
0 – 19 = low
20 – 39 = average (most women score about 24 and most men score about 30)
40 – 50 = above average (most people with Asperger Syndrome or high-functioning autism score in this range)
51 – 80 is very high (three times as many people with Asperger Syndrome score in this range, compared to typical men, and almost no women score in this range)
80 is maximum
I always think my own identification as ‘probably autistic’ is all in my head. Ha, ha. Of course it is, where else would it be? In my knees? But seriously. I guess I really might be.
via my LJ flist