Aden, Gilbert and the Dinosaurs

Aden came to play today. He is Gilbert’s age and loves dinosaurs. We have a fair amount of them. Here he is showing me the stegosaurus – this is, I am told, the mommy stegosaurus. Who knew?

Several other pictures of Aden and Gilbert are here, and I’ll be adding more later when the camera recharges.

not feeling like blogging much

But I want to get Toby a bit further down the page.

Abby has turned seven! She’ll have her party this weekend, and I’ll post pix then.

We got one of those easy set pools, love it. The children are giant pink raisin people.

That’s all for now.

Wherein I plead for votes

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.

4. Repeat!

Autism Speaks silences autistic people, ironically

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.

Over at Aspieweb they’re being told that they can’t sell a t-shirt that says

“‘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.

Autistic characters in film and television

Here’s my speculative list of autistic characters in film and TV. It’s just what I think.

Dwight Schrute (The Office)
Sheldon (Big Bang Theory)
Remy (Ratatouille)
Spike (The Land Before Time)
Luna Lovegood (Harry Potter)
Gregory House (House, MD)

I’m sure there are others. Can you think of some I’ve missed?

EDIT:
From the comments we have:
Monk (Monk)
Max (Max and Ruby)
Napoleon Dynamite (Napoleon Dynamite)
Joon (Benny and Joon)
Arnie (What’s Eating Gilbert Grape)
Forrest Gump (Forrest Gump)
Juno (Juno)
Gilligan (Gilligan’s Island)
Jerry Espenson (Boston Legal)

sitting pretty

More of Gloria’s latest milestone here.

The Good Morning America segment on autism acceptance

It’s actually pretty good. Really the only part that bothered me was the very last line. And also some garbage from the NIH guy too. Overall though it was good, please watch it. It’s linked in the post below.

The parts that bug me have one thing in common: people without deeply autistic children telling the world how parents of deeply autistic children feel. And furthermore getting it wrong.

ETA: Below I said I don’t like it when people say I’m “strong.” What I dislike is when the speaker means “…and I am weak.” You aren’t weak. If you had a disabled child you’d cowboy up and do what needed to be done too, I expect. I’m not super sainted mom. I just love my kids like everyone else, you know?

the look, acceptance and hope

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.

first time shame on you, second time shame on me

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!

I can has kid macros?

Been having a lot of fun playing with the captioner at I Can Has Cheezburger.

Loose Girl

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.

vaccines do not cause autism. autism causes autism.

I am 100% sure that Bede’s autism was not caused by vaccines. Because he hasn’t had any. I don’t think vaccines cause autism. I could believe that they make autistic-like symptoms appear in kids who have underlying metabolic problems, but I don’t think that happens very often. I think that vaccines in this country (the US) are ridiculously overwhelming to young bodies. I’m not stopping to look it up, but I have read that Japan has a later start to immunizations and does fewer than we do. Sounds good.

I myself was vaccinated. I was born in 1974 and I received injections for tetanus, diptheria and pertussis, measles, mumps and rubella, and was given an oral polio vaccine. That’s it.

I’m trying to find a doctor who is willing to work with me on getting those vaccines for my kids – although I do want even less than that. I’d like to go with the Td shot – just tetanus and diptheria – because the pertussis vaccine isn’t particularly effective and is pretty toxic.

I’m okay with the vaccine for measles and mumps, but the rubella is a no-go because it’s derived from human fetal cells, which translates to “made from an aborted baby.” So those need to be given separately instead of as the MMR.

The oral polio vaccine is no longer used in this country because it causes polio, so they’d be getting the injected polio vax – which is sometimes made from human fetal cells and sometimes not. If I can find the one that is not they’ll get that (it’s Sanofi Pasteur’s IPOL.)

I’m kind of tired of reading these angst-ridden posts on message boards that say “I vaccinated my child! She’s autistic! It’s all my fault!” I want to say NO! Vaccines do not cause autism. No studies have EVER shown a link between vaccines and autism. EVER. If you really want to think it’s your “fault,” blame your genes in the sense that they’re your genes that made the kid and her genes made her autistic. But really, that’s silly.

As far as autistic kids seeming to respond to biomedical interventions to reduce the toxins in their bodies by becoming less autistic, well, I’m not convinced. Bede has had no interventions. He has constant access to a computer and to his two loving parents (especially his mother) and to his five siblings. ANd you know what? He’s talking more, playing with us more, learning and growing. If he had been taking supplements they’d get the credit. But it’s just time and life.

And it’s a pretty good life, at that.

spectrum sibling

Faith is so wonderful. As I type, Bede is laying on top of her legs while she lies on her stomach (she is trying to watch TV) and he says “Dah B says…?” and Faith replies “The B says buh!” and so on (now they are up to S.)

She could be shoving him off. She could be ignoring him. She could be complaining to me. But no, she is smiling and happy because she loves her strange little brother.

Getting the Truth Out

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.