Our OT referral

Came. We’ll be at the OU Health Science (Sciences?) Center. Sposed to be good.

Sigh. Therapy stuff makes me melancholy because of the focus on his ‘cant do’s vs. my usual attitude. Not looking forward to intake forms. It’s not fun to see your kid described as deficits.

Will update as news presents. How bout that Michael Phelps though, huh?

autism goes to the doctor

I found out recently that our insurance will cover occupational therapy with a referral from our primary physician. I was pleased to learn that because Bede’s never had professional therapists beyond our yearly consult with his psych. But getting the referral required us to go to the doctor. Hmm.

My mom has been very busy for the last month so I waited for her to become available again and then made my call.

Phone lady: Has he been seen here before?

Me: No, you’ve seen his siblings.

PL: OK, we can see you at 3:30 on…

Me: Could you give us a time where we don’t have to wait as much? I mean, I know nobody wants to wait but he’s autistic and he’s going to be screaming pretty much the entire time he’s there.

PL: (nonplussed) Well, um, how about 1:30 on (several weeks away)? And that will be Dr. Name’s first appointment that day, he does afternoons.

Me: Excellent!

So today was the day. Sean went and got the new patient paperwork beforehand and we just handed it in when we got there. Then we waited. Bede tried to turn the tv off and on. He tried to take every magazine out of the rack. He tried to take off his shoes and clothes.

And he yelled the whooole time.

It’s the looks that get you. I understand people looking. Hell, I’d look, hear a kid scream “NOOOOO!! DO YOU WANT TO SEE THE CAR? DO YOU WANT TO LET’S GO HOME? OKAY SURE I GETCHOO LET’S GO HOME!! NOOOOOO!!” but the continual weight of the stares, the shock and disgust and the not looking away part. Well. Urgh.

Then after about 5 minutes in the waiting room we went back to the exam room. Bede was unable to be weighed because he wouldn’t stand on the scale. He’s very tactile defensive especially about his ears so no go on the temperature reading. When we got to the room he climbed up on the exam table and started taking the disposable otoscope covers out of the dispenser. When dissuaded from this he became upset. More yelling. The nurse left and said the doctor would be right in.

When he came in his eyes widened a bit at Bede and he said, over the din “I’m Dave. Nice to meet you!” He sat down (as I detached Bede from the dispenser again) and said “I understand you’re here for a referral for OT. You’ve got it.”

Yay!

Then he wanted to talk about Bede, who was at this point basically insane. He was amazed that Bede could read and write yet not converse and said “He’s like a savant!” He took a history and then left, somewhat shell-shocked. He came back in to ask “Do you immunize?” I got the same general impression I have always gotten from that clinic: no problem, let us know what you’ve decided. We think vaccines are good and safe but it’s up to you. (Regular readers of my blog will recall that we vaccinate very selectively on a highly delayed schedule.) So that was nice to not feel bullied. They also have the individual vaccines there, the nurse told me, for those who want single shots vs. multidisease ones.

Then we left. Bede declared that he wanted McDonald’s so that’s what we got. And that brings you up to date, OT here we come!

Hyperlexia: A Literary Journal Celebrating the Autistic Spectrum

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 submissions@hyperlexiajournal.com 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.

I’m one of 3 editors. The other two are Brittney Corrigan and Kerry Cohen Hoffmann. They’re much better writers than I and I’m honestly just pleased as punch that I’m included.

So, get writing! This thing will only fly if you write for it, after all! Deadline for submissions is August 31.

Twenty days later

This is what we’ve been doing this summer. Autistic kids sometimes need lots of repetition to get comfy with new things, much more so than nonautistic children. Bede, who loves water, had that reaction to our new aboveground pool, as follows:

Day One: Pool is set up. Bede jumps in the water, freaks out. Will not come near the pool again that day.

Day Two: Bede refuses to come outside when everyone else swims, cries when shown his swimsuit.

Day Three: Bede wants nothing to do with his swimsuit at first but wears it after much cajoling, and enjoys the kiddy pool.

Day Four: Bede puts his fingers in the big pool and dances away many times. He’s smiling.

Days Five-15: As Day Four. A few times I hold Bede in my arms and stand in the pool, but he becomes very agitated so I don’t press it.

Day 16: Bede puts his face in the pool several times.

Days 17 and 18: Bede doesn’t completely flip out when I stand holding him in the pool, and splashes a little with his hands.

Day 19: Bede gets in the pool! Gets out. In, out, in, out. For about an hour.

Day 20: Bede goes swimming!

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)

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.

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.

024

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.

laptop for Bede – done! 2go pc ftw!

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.

the week in review

So let’s see here.

Gloria rolled over several times and looks like a little airplane on her belly. She holds up her arms and her legs with just her tummy touching the floor and just looks so pleased with herself.

I got approved to use Bede’s SSI back pay to purchase his laptop. This is a big deal because the back pay can only be used for medical and therapeutic costs, so I had to demonstrate that he needed it, not just that he wanted it. Now I get to shop in earnest, as the money should be in his account later this week. ANyone have any recommendations? I’m looking at the ASUS Eee because it is small, lightweight and fairly shockproof, but I want to wait to buy the 9 inch screen, I think, so Bede won’t have to scroll as much. If I buy that one I’ll buy two of them so if one gets crushed I’ll have the other. Hell, maybe I should buy 3. It’s like buying him a voice, after all, and three of them cost as much as one midrange Dell. Hmm.

Faith is thrilled with your comments! I’ll post a detailed version of how to make your own screencaps for kids later. SHort version is, get the screen to look like you want to modify and press the Print Screen key on the keyboard. Open Paint and choose Edit – Paste. Use the select tool to pick the area you want to modify. Choose Edit – Copy. Open a new instance of Paint (i.e., open Paint again.)  Then choose Edit – Paste again in your new Paint and go to town. If you mess up more than Undo can help you, go back to the first Paint you opened and select the part you want to edit again.

And now I have tarried long enough.

my neigbor’s keeper

I was outside today to check on the volunteer mulberry tree we have in our front yard. It’s right under an overgrown yaupon bush and honestly it’s a total mess of a botanical war as the two plants duke it out. The mulberry had a few berries last year but this year it looks absolutely loaded with them.

As I wandered around it, trying to find an early ripener, I saw a man riding down the middle of my street on a bicycle. He looked to be in his early twenties, black, with short hair, a beard and moustache, and glasses. He was wearing a baseball cap advertising the tire shop down the street, football jersey and sweatpants, and athletic shoes. I waved as he rode by and he stopped his bike and said “Hi!”

I said “Hi! It sure is a pretty day. This tree’s just crazy, isn’t it?”

As I spoke, he walked his bike over to me, a bit too close, and squinted at the tree.

“It’s mumblemumble!” he said, and pointed. Then he walked right up to the tree and plunged into the underbrush. He gestured to me excitedly, and I walked over to look where he was pointing, inside the trees. He spoke like he had a mouthful of marbles.

“It’s two trees, two trees, two trees!” he said.

“It is two trees!” I said. “And look, this one has berries!”

“Two trees, and berries!” he repeated, beaming at me.

“The leaves are different too, this one has small leaves, and this one has big leaves,” I said.

“Well look at that!” he said.

“I have to go back inside now, my children need me. Have a nice day!” I said.

“Have a nice day!” he said, got back on his bike, and pedalled off.

So, bike man’s loved ones, somebody else on 24th Street is keeping her eye out for him. No worries.

recent amazements

Bede’s visit with his psychologist was good. My mother was able to come with us and got to meet Dr. Mobley, who(m?) she liked very much. We were late getting there due to getting a bit turned around in Norman, but it was fine since Bede was able to handle about 30 minutes in her office before he became completely unable to control himself. When we left he was trying to remove all the clocks from her walls and scale the Dutch door into the office kitchen. Yeah, time to go!

Diana noticed Bede’s mental flexibility and ability to cope with the unexpected had improved markedly from last year, which is true, and his referencing of me for cues as to what is going on/how to feel. She also thinks that occupational therapy to address his sensory integration problems will help a huge amount, so we will definitely pursue that and see. (Regular readers of this blog will remember that Bede does not wear clothing, well, ever, unless he’s in a public place and actively reminded to remain clad.) She noticed he was toe-walking to avoid the berber carpet in her office, which would make sense in the deep-pressure seeking, light touch avoidant kind of way that Bede is.

She also said she thinks I’d have gotten an Asperger diagnosis as a child had there been one to give me, which didn’t surprise me at all. When I said “Well, sure I had those traits as a kid but now, you know, I’ve outgrown the diagnosis, right?” she actually chuckled and said something like “No, no, I don’t think so.” So I guess I could pursue a formal diagnosis but I don’t see the point. That’s enough for me to know I’m not making it all up, you know? Expect some introspective posts about all this soon…

Good Lord, look at the time! Have to go to bed.

Happy Mother’s Day, all you mothers!

mosquito teen repellent and autistic annoyer

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.

Bede’s quantum leap

Today Bede volunteered that D is sad. W is happy! on one of our favorite DVDs, They Might Be Giants: Here Come The ABCs. Totally just, you know, telling me stuff, in unscripted standard English. They don’t say that the letters are happy or sad on the DVD, but they obviously are, from their body language.

If you don’t have a minimally verbal autistic child you may not get the import of this. Jennifer, I’m looking at you! It’s been with such happiness mixed with hopeful anticipation that I’ve read your posts on Zane’s language. I’m so pleased to be writing a few of my own!

He’s also been very conversational about other stuff too, from comments on food to little back and forth letter and word improvs between us.

This has been building for a few months and now boom! He’s so awesome!

Autistic man tortured and shot in Alva, Oklahoma

http://newsok.com/article/3229109/

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?

Bedeisms

Here are a few Bedeisms. Bedeish.

Pants are ‘japans.’ Always.

He likes me to make letters out of Play-Doh. He specifies “Want see ‘a’?” or, alternately, “Want see CAPSLOCK ‘A’?”

We have a box of candy canes that look like these. He saw them in the cabinet a few days ago and said “Want see Bob? Want see red-n-white Bob? Want see red-n-white Bob Js?”

And my favorite… arms up, sweet boy says, “I love you!” as he’s scooped up for a great big hug.

puzzled

The puzzle ribbon.

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.

ASUS Eee

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.

Hmm.

I also like the name. Bede warbles and hums as he runs about in the house, and that sounds like him: “Asus! EEE!”

M&Ms (or Smarties) Autism Day Meme!

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.

What’s Wrong With This Picture

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.